Ben had the flu

So, Ben had the flu this week. You would never have known it except that on Thursday evening/Friday morning he had a pretty high temperature (102.5 at one point) and was tossing and turning throughout the night. So, Friday morning, I took the girls to school for their last day before break, while Joe took Ben to the dr. Klara also had her Primary performance she did not want to miss. They automatically did a test for flu since he had the high temperature, as well as the fact that his sister Klara had had the flu on Dec 7. Ben had his flu shot (of course!) and had a course of tamiflu when Klara had the flu. But, with his immune system being so suppressed, those things don't always work as effectively. His test came up positive for flu a. The same as his sister. Though, his teachers had told us that 3 kids went home sick with fevers that week, so it is also possible that he got sick from the school. Or anywhere outside of school. Or in the hospital during his biopsy. Anything is possible. Especially since Klara had been better for over a week and a half by the time Ben got sick. Anyways, they immediately put Ben on tamiflu again. Due to his transplant he has to go on tamiflu if he has the flu, even though he had been on preventative tamiflu just 2 weeks before.They also upped the amount of his breathing treatment he gets to 2 puffs a day, and added in some of his xoponex. We also decreased the amount of his cellcept to allow his body to fight off the infection. But, only for 7 days so that he does not reject.

Later on that evening, I started getting a headache and cough and feeling very blah. Joe took my temperature and I had a slight fever as well. I went to the urgent care and they gave me tamiflu as well since i have asthma and having the flu can result in pneumonia, asthma exacerbation and hospitalization as well as being on oxygen. They also gave me robitussin with codeine, which helps with the coughing at night. Though that has gotten better too.

Ben has actually looked REALLY good. I attribute this to his flu shot and first course of tamiflu really helping out. He only looked really sick on Friday morning. After a couple of doses of tylenol and the first dose of tamiflu, he looked perfectly fine. He was actually playing with his sisters by that evening. I felt better by Saturday morning, though still really tired and really achey. I feel almost like myself today.

All this is to say, even though the flu shot was not a good match this year because one of the strains mutated, it DOES help minimize and shorten the duration of the flu, even when it is a different strain. If Ben had not gotten the flu shot, or if he had not gotten his first course of tamiflu, I think we would have had a much different course. Perhaps hospitalization, perhaps it would have been weeks of illness. It probably would not have involved my spunky boy who is right now running around playing with his sisters and breaking their houses ;)

Eating (pasteurized) eggnog on Saturday

With Klara, after running around

Playing in his heart hero cape

Ben's biopsy and anniversary

On December 11th, Ben had his annual biopsy. Ben and I stayed overnight at the Ronald McDonald house Wednesday night to Friday morning because we had to be at Lurie at 6:45 for labs before his biopsy, and then we also had his NICU follow up on Friday, which also happened to be the 3 year anniversary of when all of his heart issues started. Wednesday evening consisted of doing everything I could to fill up Ben's belly without making him vomit ;) He was not allowed to eat after midnight and could only have clear liquids up until 6:30 am.

Eating his dinner

Having his first snack-chips and hummus

Last snack-ice cream

Of course, when I woke him at 5:45 to get him dressed, and eat some jello, he went right back to sleep, negating any time for jello. We got to the lab area, and of course, they were not open until 7. And were not at all prepared to do his labs, even though someone had told us to show up at 6:45 the day before. So, we went back up to the pre-op area and they said they would take us back and do his labs right away. Which I was skeptical about, but went along with. Right away, turned out to be 7:45, which is not horrible, but his labs are supposed to be drawn before 7 because of a timed med that he has to get at 7 am. Consequently, when we got his prograf levels back, they were 3.2. They are supposed to be in the range of 6-8. Which was really worrisome. Now, 45 minutes late on the blood draw couldn't account for it being that much off though, so they did raise his prograf to 3.6 and we are doing a redraw next week. We also were placed in isolation due to Ben having had a questionable MRSA when he was pre-transplant. Apparently this never goes away until he does a series of 3 tests. So he also had one of those done at the hospital and will have one done next week and one at the pedi so we can hopefully get the isolation precautions lifted when we go there next time. Around 8:15, Ben started getting really antsy, and started saying how HUNGRY he was ;) So, they gave him his sleepy medicine around 8:30, and he started calming down. And getting a little loopy. When Joe called, he told him, "Daddy, they STICKED me!" about the phlebotomist. :)

A little sleepy here 

He went back around 8:45, and the procedure took a little over an hour. They told us everything went really well. All of his pressures looked good, the arteries looked good. The next day they called and said the biopsy results were 1a, which is not a 0, but still really good and they weren't going to do anything about it. But, obviously still wanted that follow up on the prograf level. Also, the x-ray looked good. No cardiac changes and no pneumonia. Ben fell asleep really early that night. Around 8:30. But, not before putting Winnie the pooh to bed first (they gave him Pooh in order to calm him down that morning when he was getting fussy about having to stay flat on his back after the procedure.) 

Put Winnie the pooh to bed too

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fell right to sleep

12/12/14-This was the 3 year anniversary of the day all of Ben's heart issues started. And we had his NICU developmental clinic today. I love that on this day, the day that was one of the worst days 3 years ago, I had a psychologist and a speech therapist and doctor telling me just how wonderfully he is doing. The speech therapist said his speech is very typical of a 3-year-old's. She didn't see anything to worry about. We should work on his L's, because he substitutes Y for L, where most kids his age would substitute W. But it is not something to be concerned about. And cognitively, he is doing very well too. He is even doing stuff that is more advanced than some of his peers in some areas. Gross motor skills stll need some work, obviously. But, even the PT said, "well, his skills have always been slower. He is just working on Benjamin time. He will get there, it will just be on his own time." She is also going to help us try to get Aetna to pay for his services. Hopefully they will, because he definitely needs it! She did see him climbing all over the tables and standing on chairs, so he does have some skills that are right on target ;) We are very happy with how well he did the last two days. So, we also bought him a little lego set at the lego store. He also got a couple of little toys from The RMH, and from Santa and Lurie. So, he had lots to play with the last few days.

Looking out the window before the Dr came in

Showing off how he can climb on a chair